Tuesday, June 14, 2011

The Stress Test

 This blog will be posted some time after it was written due to an outside directive to not talk about my living donor experience until after I have donated.  If you are reading this, it is because I have completed the donation process.

February 7, 2010

When I first started down this path of wanting to be a living kidney donor, a lot of the research and personal stories I read told me that there would be stress, worry and/or fears and there might even be a dash of anxiety for good measure. It's all "normal" and to be expected.

Except I really didn't have any stress about being a donor. None of the tests scared me (okay, the MRI didn't thrill me but it wasn't a terror thing and I was over it within a few hours).  I've been okay with watching vials of blood come out of my arm and telling my story to countless strangers in lab coats. I am comfortable with the risks of the surgery including the potential negative consequences the present and future Lauren might face. I've oddly enough even been at peace with taking the time off work (for those of you who know me well, that in itself should say something). From day one the commitment to donate a kidney to a stranger has not phased me-I am ready, willing and hopefully able. I've said it before-this has been a rewarding and interesting experience thus far and I'm very sure of myself as it pertains to this decision.

What HAS been almost overwhelmingly stressful to me is this conflict or disconnect with the Southern Alberta Transplant Program over the Canadian Blood Services "Social Media Guidelines". Everything from the way the message was delivered to when it was delivered has been upsetting, confusing and has lead to a real distrust of some people involved in the program. I'm not talking about the doctors and the technicians who have dedicated much of their working lives to making things better for people in need of transplants. I'm talking about the policy makers or even worse-the people who are not trained specifically in privacy and compliance at all who are interpreting the policies and what impact it should have on me as a patient.

On January 14th, as part of their communication of the Privacy Guidelines, it was stressed that they were not reprimanding me. But yet they went on to deliver an "or else" message to me. When was the last time as an adult you received one of those? They made me feel like a risk, a liability rather than a patient and more importantly, a potential donor. It's like I became a problem to them and not a solution for someone. It seemed like for the first week they were changing their minds on what I could and couldn't do-giving me the go ahead to talk to the media then doing a complete 180 a week later telling me essentially any communication outside of the telephone prior to surgery is prohibited (which they can't do...but whatever). How do I trust these people after that?

I've had this horrible feeling for almost a month now that their misunderstanding of privacy law and risks will lead to a decision to not let me donate. That has kept me awake at night.  Not worry about pain after surgery,  not worry about the logistics of the operation, its success but that. And to be blunt, that's crappy. I was doing a good thing and I feel like it was all for not.

I went back to them a couple of weeks ago with some questions and they have artfully delayed responding until I see the doctor this Thursday.  I guess "whatever will be, will be" but I could have done without all this.

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